"First and foremost, I am My Self."
Kerry, who lives in Ayrshire, was diagnosed with MS 18 years ago. She tells us about what it was like, what advice she has for other newly diagnosed people, and how she chooses to define the initials ‘MS’.
I was 28 years old and it was a beautiful end-of-summer day when a GP I’d never met before said the numbness I was experiencing on my right-hand side might be multiple sclerosis.
It totally floored me. I took the rest of the day off to try and make sense of it, but I couldn’t.
It felt like the worst day of my life. I thought MS meant I would lose my mobility, my independence and my ability to do the sports that I loved.
I floundered around the Internet. Some of the things that I saw looked bad, depressing and hopeless. I was scared for the future, and so sad for what I thought I might lose. I felt angry that I now had this disease.
Sound familiar? If you’ve also been diagnosed with MS, I’m sure you know those feelings only too well!
But MS is only a part of who I am. It doesn’t define me. It’s difficult to put this kind of perspective on a diagnosis – but first and foremost, I am My Self.
MS and the Internet
I’ve also realised - the hard way! - that Dr Google is NOT my friend.
It’s natural to turn to the Internet these days. But unless you stick to sites you know you can trust – like the MS Society and NHS – you can find some really negative things. Worse still (for me anyway) are the stories of people ‘curing’ their MS through ‘natural remedies’.
Don’t get me wrong, I love reading about people using things like diet and exercise to manage their MS. But in terms of ‘treatment’? I’ll stick to prescription drugs and medical advice!
Getting treatment for my MS
In my experience, there seem to be two schools of thought when it comes to treatment.
The first consultant I had was of the ‘hit it fast and hit it hard’ variety. Taking the most effective method of treatment as early as possible.
The second consultant I saw favoured a more stepped approach: moving ‘up’ through the medications until you find the one that works for you.
Find out more about treatment for MS
My advice for people with MS
I think you need to decide which is right for you. MS has been called the ‘snowflake’ disease, as no two cases are alike. Everyone is different. You know yourself – your lifestyle, your commitments and responsibilities. So you’ll know best what kind of treatment will fit into your life!
Thinking about choosing or changing your DMT? Try out our DMT decision tool
It can feel like a lot of information to take in at once. But there’s no need to panic. Take some time. Talk to your family and friends about how you're feeling. Get some counselling. Grieve for your past self. Practice self-care.
MS can be a cruel condition, but it’s not terminal. You don’t have to make sense of it straight away: let it sink in.
And then fight. We often refer to ourselves as MS Warriors, and there’s a reason for that. Remember, you are so much more than just MS.
Staying positive, trying not to second-guess your future and surrounding yourself only with those who love and care for you: these are the things that define you. Not those initials. Not your symptoms. Not even the uncertainty.
Your attitude is what will keep you going. So own it, deal with it and then try to be your pre-diagnosis you.
